Thyroid UK
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Disappointed with private endo

Went to see a consultant who is supposedly highly regarded in his field. Have come away feeling disappointed with his recommendation. I have been on 75mcg Thyroxine he says I need to increase to alternate days 100mcg / 125mcg despite me telling him on 100mcg I felt awful and had to revert back to 75mcg. Said if that doesn't work might want to consider mild depression as all the symptoms I spoke of are general and not down to thyroid. So my hair loss, low energy, sleep issues, low mood and libido low vit D and iron levels amongst other things are all down to being depressed? Could he be right or is this yet another fob off?

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I can't comment without knowing what your levels were at the time but I would be interested to know if this endo is on our list. Would you mind private messaging me with his name?

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Hi, oh haven't private messaged anyone before, will send you a msg a bit later once I work it out :-)

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Syd35,

To send Lyn a message click on her username and click on Message on her profile page. See Demo in To send a private message: support.healthunlocked.com/...

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Thanks figured it out :-)

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Many endocrinologist wrongly not interested in gut or low vitamin levels

Do you have Hashimoto's, also called autoimmune thyroid disease diagnosed by high thyroid antibodies?

Can you add your most recent test results and ranges for TSH, FT4 and FT3 plus vitamin D, folate, ferritin and B12

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Thanks for reply SlowDragon - Yes he didn't seem to be interested in the low vitamin levels and Yes it has been confirmed I have Hashimoto's, recent results as follows - TSH 0.90 (0.55-4.78) / T4 16 (10-25) / Vit D - 33 / Folate - 6.7 (3.0-20.0) / Ferritin - 24.4 (7.0-150.0) / B12 - 560 (200-700). Was refused FT3 testing.

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So are you supplementing for these dire vitamins levels

If so what exactly?

Your endo probably a Diabetes specialist

To not recognise these low vitamins are affecting thyroid is very poor

See Box 1. Towards end of article

Some possible causes of persistent symptoms in euthyroid patients on L-T4

You will see low vitamin D, folate, ferritin and B12 listed

onlinelibrary.wiley.com/doi...

About 90% of all hypothyroidism in Uk is due to Hashimoto's

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working (as listed in link above)

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's gut connection is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

Persistent low vitamins with supplements suggests coeliac disease or gluten intolerance

gluten.org/resources/health...

Detailed supplements advice on Low vitamins and how to improve

healthunlocked.com/thyroidu...

Suggest you improve vitamins first and then get private full testing including FT3

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Thanks SlowDragon - have been testing negative for coliac. I did ask consultant re going Gluten free and he said no evidence to suggest this helps even though I know in myself I felt better when I did a trial of going Gluten free, just slipped back into eating it again must try harder as I believe there is something in this!

Was given iron tablets and told to buy a multivitamin containing Vit D by my GP and also had some good advice from members here re vitamins as I posted about that previously. Will read through your links thanks for the help :-)

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avoid multivitamins - they contain too little of anything we need and most contain iodine - definitely not recommended with hashimoto's

Endo is wrong about non-coeliac gluten sensitivity

Thousands on here are living proof. They have their head in the sand over this

I also tested negative for coeliac twice. Finally had endoscopy and showed substantial damage - as if coeliac (more on my profile)

Vitamin D - try Better You vitamin D mouth spray - avoids poor gut function

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Thank you :-)

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Your Vitamin D is only 3 points of severe deficiency

Really GP should prescribe 1600iu for 6 months

But that's unlikely enough with Hashimoto's anyway. Suggest 3000iu daily and retest in 2-3 months

Vitamindtest.org.uk

oxfordshireccg.nhs.uk/profe...

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Your ferritin is much too low as well

Eating liver once a week will help improve

But if you don’t like liver will likely need to supplement ferrous funerate

GP should run full iron panel to test for iron Anaemia

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You said you felt awful on 100mcg per day. But what were you symptoms on that dose?

And what are your symptoms on 75mcg per day?

(I'm wondering which of your symptoms got worse on the higher dose, and whether you got any new symptoms on the higher dose.)

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Thanks for reply humanbean - After a few days of increasing to 100mcg I felt extremely fatigued, my BP went higher (already medicated for this), had headaches and felt generally terrible. The chap I spoke to today was surprised I felt worse and said it was maybe coincidence and to try an increase again and give it 6-8 weeks.

I tried the increase hoping it would make me feel better as on 75mcg I have the extreme tiredness also and often don't feel very good in myself but after trying the increase decided I would rather stay at the lower dose. So he now tells me to go to 100mcg/125mcg alternate days, I will give it a go but am not convinced.

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Ditto. Put on BP meds last appt as BP was reading too High Wonder if we could be allergic to Levo, a friend was and feels much Better off it ,believe GP now in control. Maybe worth mentioning

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You mentioned hair loss and fatigue. And I noticed your ferritin level (iron stores) was not good. Low iron is one cause of hair loss, and is a common cause of fatigue.

Ferritin - 24.4 (7.0-150.0)

You may find this interesting :

cmaj.ca/content/184/11/1247...

Note the interpretation of the above paper :

Iron supplementation should be considered for women with unexplained fatigue who have ferritin levels below 50 μg/L. We suggest assessing the efficiency using blood markers after six weeks of treatment.

People with hypothyroidism have found that they feel best with a ferritin level around mid-range or a smidgen higher. Good levels of iron are needed to help the body convert T4 to T3. So, round about 80 - 100 with the reference range you've been given.

Unfortunately, it isn't a good idea to supplement iron just on the basis of a ferritin result. You would need to know your serum iron level too. Some people have poor levels of ferritin, but have high serum iron. In those circumstances supplementation with iron is not a good (or safe) idea.

The best way of testing iron properly is with an iron panel.

medichecks.com/tests/iron-s...

.

Once you have optimised the basic nutrients as best you can, if you still struggle to raise your thyroid meds, then one possible cause is low or high cortisol levels. Unfortunately, there is a lot of cross-over between symptoms for low and high cortisol. It isn't possible to guess which you have (if you have either).

Doctors usually dismiss cortisol levels as the cause of symptoms. If they test at all they will test cortisol with a blood test in the morning, or even worse, they do a random cortisol test. Cortisol levels vary throughout the day, so a good level at 4.30pm would be far too low if someone had the same result at 9am. Alternatively, a good level at 9am would be far too high if the same level was found at 4.30pm.

This picture shows you the cortisol rhythm for cortisol :

data.integrativepro.com/ima...

There are more complications with cortisol. If it becomes necessary for you to test it, you should do some research on the forum. Then, if necessary, you can ask for help in a new post.

.

Following testing I found I had high cortisol. Lowering it with appropriate supplements has enabled me to reduce my life-long insomnia (to some extent), and I was able to increase my dose of thyroid meds up to a level which worked for me. So it is worth investigating if fixing nutrients doesn't eliminate problems.

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Humanbean - Thank you for taking the time to give me such a detailed reply it is appreciated and will have a look at the links you attached. Kind regards 😀

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Diddumsin

I have a tsh of 1.1 and feel no better. Blood test in morning......dont have results yet and advised to 'start a new thread'...............where?

Meant to say am on 75mcg of levo and don't have Hasimotos,

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If you go to this page :

healthunlocked.com/thyroidu...

Look near the top, and you'll see, in blue, "What's on your mind?".

Click on the blue sentence and it takes you to the page to write a new thread.

And if you said "How was I supposed to guess that?" I would have to say, "I don't know". It's a ridiculous way of prompting people to write posts!

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SORRY see what you mean ! I am so unobservant, I would be a useless detective!

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Glad you found it. :)

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So am I but message keep disappearing......given up for now Maybe its me!:o(

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To contact HU Support by email the address is :

support@healthunlocked.com

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HB,

HU will be reverting to Write or Write a post but I don't know when.

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Excellent news!

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Even more ridiculous am afraid as at top of my page just says home, hub and chat with a picture if a bell close by! there is a black sentence saying search " Thyroid uk "

Maybe "whats on yr mind " is on home page...will have a look THANK YOU!

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